Integrating palliative care and heart failure: a protocol for a realist synthesis (PalliatHeartSynthesis)

IntroductionHeart failure affects over 26 million people worldwide with prevalence expected to grow due to an ageing global population. Palliative care can address the holistic needs of patients with heart failure, and integrated palliative care in heart failure management has been indicated to improve outcomes for patients. Despite known benefits for integrated palliative care in heart failure management, implementation is poor across the majority of global health services. Recent systematic reviews have identified the benefits of integrating palliative care into heart failure management and highlighted barriers to implementation. However, there was heterogeneity in terms of countries, healthcare settings, delivery by differing staff across multidisciplinary teams, modes of delivery and different intervention components.Methods and analysisThe aim of this study is to identify how integrated palliative care and heart failure interventions produce desired outcomes, in which contexts, and for which patients. We will undertake a realist synthesis to identify this, using Pawson’s five iterative steps. We will recruit an international stakeholder group comprised of healthcare providers and patients with heart failure to advise and provide feedback throughout the review. Our initial realist programme theory sets out the necessary steps needed to accomplish the final intended outcome(s) from the implementation of integrated palliative care and heart failure. This initial programme theory will be shaped through an iterative process of testing and refinement.Ethics and disseminationEthical approval is not required for this study. With our stakeholder group, we will coproduce a user guide that outlines practical advice to optimise, tailor and implement interventions designed to integrate palliative care and heart failure, taking into consideration local context, alongside user-friendly summaries of the synthesis findings using short animations to convey complex findings. We will draw on the expertise within the stakeholder group to identify key stakeholders for disseminating to relevant audiences, ensuring outputs are tailored for their respective needs.PROSPERO registration numberCRD42021240185.

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Symptoms and Palliative Care Concerns in Patients with Heart Failure Explored with the Integrated Palliative Care Outcome Scale (iPos)

10.26226/morressier.5c76c8bce2ea5a7237612698 ◽

2019 ◽

Author(s):

Carmen Roch

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Palliative Care Outcome Scale ◽

Patients With Heart Failure ◽

Care Outcome

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Pediatric Palliative Care in the Heart Failure, Ventricular Assist Device and Transplant Populations: Supporting Patients, Families and Their Clinical Teams

Children ◽

10.3390/children8060468 ◽

2021 ◽

Vol 8 (6) ◽

pp. 468

Author(s):

Kyle D. Hope ◽

Priya N. Bhat ◽

William J. Dreyer ◽

Barbara A. Elias ◽

Jaime L. Jump ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Heart Transplantation ◽

Ventricular Assist Device ◽

Mechanical Circulatory Support ◽

Pediatric Palliative Care ◽

Circulatory Support ◽

Assist Device ◽

Ventricular Assist ◽

Patients With Heart Failure

Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation.

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Context Matters: Exploring Intervention Dose and Dose-Related Outcomes in a Palliative Care Intervention for Patients with Heart Failure (SCI910)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.01.073 ◽

2021 ◽

Vol 61 (3) ◽

pp. 674-675

Author(s):

Rachel Wells ◽

James N. Dionne-Odom ◽

Harleah Buck ◽

Andres Azuero ◽

Sally Engler ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Care Intervention ◽

Patients With Heart Failure

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1443 Collaborative Working: Focusing on the Palliative Care Needs of Patients with Heart Failure

European Journal of Cardiovascular Nursing ◽

10.1177/147451510500400134 ◽

2005 ◽

Vol 4 (1) ◽

pp. 64-64

Author(s):

Sarah Young ◽

Jan McFadyen ◽

Ann Gibbins ◽

Carolyn Kenny ◽

Sheila Boyer ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Care Needs ◽

Patients With Heart Failure ◽

Collaborative Working ◽

Palliative Care Needs

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Qualitative study to explore what patients with heart failure find significant during integrated palliative care sessions in a Danish clinic

BMJ Open ◽

10.1136/bmjopen-2020-043955 ◽

2020 ◽

Vol 10 (12) ◽

pp. e043955

Author(s):

Stine Gundtoft Roikjær ◽

Charlotte Paaske Simonÿ ◽

Helle Ussing Timm

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Meaning Making ◽

Interview Study ◽

Exclusion Criterion ◽

Semistructured Interview ◽

Patients With Heart Failure ◽

New Diagnosis ◽

Medical Perspective

ObjectiveIn the field of palliative care (PC) as it is integrated into heart failure (HF) treatment, it is essential to explore the patient experience and build on this knowledge for the further development of PC practice and policy. Based on an intervention study, this paper explores what patients with HF find significant in integrated sessions using a narrative S’ approach.DesignWe conducted a semistructured interview study with a qualitative analysis focused on meaning making. The study follows the guidelines of Consolidated Criteria for Reporting Qualitative Research.Participants and settingThe inclusion criteria for the PC intervention were (1) a new diagnosis of HF, (2) follow-up treatment at this local Danish HF clinic and (3) informed consent to participate in the integrated PC intervention. The only exclusion criterion was if the patient was already engaged in a PC programme. 20 patients agreed to participate in the intervention, and 12 of these completed the S’ approach sessions and participated in this interview study.ResultsOverall, the analysis showed that the integrated S’ approach sessions were successful in joining an embodied patient perspective with a medical perspective. The thematic analysis resulted in three themes supporting the overall findings: sessions bring comfort, telling your story provides a sense of meaningfulness, and integrating perspectives of HF into everyday life.ConclusionThe method using the S’ approach in integrated PC and HF sessions was significant in various ways. First, patients experienced a calm and safe atmosphere and perceived that the nurse was truly interested in them. Second, the integrated sessions based on the S’ approach were able to bring comfort to lived physical, psychosocial and existential issues. Last, it allowed patients to combine their embodied understanding of HF with a medical perspective, thereby finding meaning in the sense of how everything is connected.

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